Patterns of research activity related to government policya UK web

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1107
ORIGINAL ARTICLE
Patterns of research activity related to government policy: a
UK web based survey
S S Hawkins, C Law
...............................................................................................................................
Arch Dis Child 2005;90:1107–1111. doi: 10.1136/adc.2004.069781
Aims: To describe the patterns of child and family health and wellbeing research activity in the fiscal year
(FY) 2002/2003 in relation to UK government policies.
Methods: Projects investigating the health and wellbeing of children and families were located through a
web based survey of major research funders, including UK government departments and non-
See end of article for departmental public bodies, research councils, and medical charities. A budget was estimated for each
authors’ affiliations project for the FY 2002/2003, and each project coded according to a framework which reflected
....................... government priorities and research methodologies.
Correspondence to: Results: There was a substantial amount of project information posted on the websites of the funding
Dr C Law, Centre for Policy organisations, but the level of detail varied. For the FY 2002/2003, 31 organisations were identified that
Research, Centre for commissioned 567 projects investigating the health and wellbeing of children and families. Based on
Paediatric Epidemiology
information from organisations’ websites, this represented approximately 3% of their research budgets.
and Biostatistics, Institute of
Child Health, 30 Guilford Within this funding area, low proportions of research activity related to health inequalities (9% of total
St, London WC1N 1EH, expenditure on child and family health research), health economic analysis (8%), primary and secondary
UK; c.law@ich.ucl.ac.uk prevention (12%), and children and adolescents at high risk of ill health (14%).
Accepted Conclusions: A limited amount of research activity on children and families health funded in the FY 2002/
28 February 2005 2003 is addressing UK government policy priorities. This suggests the need to commission further research
....................... to fill gaps in the evidence.
T
he National Service Framework for Children, Young People and research, and within that, how patterns of research activity
Maternity Services (Children’s NSF)1 in England, National related to a range of policy priorities. Research for child and
Service Framework for Children, Young People and Maternity family health is funded by many organisations. It is carried
Services in Wales2 consultation document, and A Framework for out across different sectors of the research community and
Maternity Services in Scotland3 reflect the UK government’s involves many disciplines and methods, from basic science to
commitment to the health and wellbeing of children, young health promotion and economic analysis. Our survey
people, and families. However, despite the aspiration to attempted to reflect this breadth. We used a modified
evidence based policy,4 the evidence base to support policy World Health Organisation (WHO) definition of health,
and practice is lacking. A synthesis of the evidence which which encompasses wellbeing.7 We also included research
informed the English Children’s NSF has recently been on predisposing factors that impact directly on the physical,
published,4a and identified many gaps. Researchers in child mental, and social health and wellbeing of the child and
and family health have long complained that this area is of family, such as health related behaviours (for example,
low priority to funding organisations.5 If the evidence base smoking) and services (for example, antenatal care).
for policymaking is to improve, then commissioning of new However, we did not include research that addressed
research needs to occur. predisposing factors that do not directly impact on child
The research cycle can be a lengthy process, and many years and family health, unless a health component of the research
may elapse between commissioning a project and its results was explicitly stated. For example, research on raising
being integrated into the evidence base.6 As results from educational attainment would not have been included,
research activity currently ongoing are published, gaps in the whereas research on health promoting schools would have
evidence base may be filled. On the other hand, if research been. Our definition of research was based on the
projects being conducted now are not addressing areas of policy Department of Health (DH) (England) definition.8
priority, then identified gaps will persist and will need to be
addressed by new research. Thus, it is essential that priorities for
newly commissioned research on child and family health take Identifying funding organisations
into account current research activity. However, this activity has The websites of UK governmental and non-governmental
not been systematically assessed or collated. organisations were viewed to determine which organisations
We have carried out a web based survey of organisations fund research related to child and family health. Seven
which fund child and family health research. We have government departments, six non-departmental public
assessed patterns of funding for current research activity bodies (NDPBs), and three research councils were identified.
addressing child and family health, in relation to the policy Medical charities were located through the Association of
priorities of the UK government. Medical Research Charities (AMRC).9 Charities that fund
child and family health research were categorised according
METHODS to research budget, as found on the AMRC website. All
Scope charities with an annual research budget of over £1 million
We set out to estimate how much was spent on child and and who conduct child and family health research were
family health research relative to the total expenditure on all included (n = 15).
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1108 Hawkins, Law
Table 1 Framework for coding current research activity (where appropriate, policies are
referenced)
Category Subcategory and relevant policy Factors
1 10 11
Policy Inequalities in health Age
Gender
Ethnicity
Socioeconomic status
1 12
Children’s NSF (as described in Promoting health
DH publication, Emerging Findings, Supporting parents
2003) Integrated child and family centred services
Growing up
Children who are ill and/or have long term conditions
Children in hospital
Children with mental health needs
Disabled children
Children in special circumstances
Maternity
Medicines (including health technologies)
13 14
Child involvement (modified User involvement
15
definition from INVOLVE )
1 10
Characteristics of Stages of life Mother and infant
people and their Child
lives Adolescent
Adult
Burden of disease Mortality
Morbidity
Wellbeing1 10 Health related behaviour
Quality of life
Description of Type of research Basic science
research Applied—observational
Applied—intervention/evaluation
Systematic review
1 10
Prevention Primary
Secondary
Tertiary
16
Economic analysis Cost effectiveness
Cost of services
Assessing projects year (FY) 2002/2003. This was chosen as the most recent
We conducted literature and internet searches to determine period for which information on the internet was most
whether a theoretical framework was available to describe complete at the time of the survey (January–April 2004).
activity, priorities, and gaps in child and family health Research projects receiving funding in this period were
research activity. We were unable to locate a framework, so included if they: were conducted at UK institutions or within
we designed our own based on recent UK or English the UK; involved children below the age of 19; and/or
government policies and broad descriptions of research involved fathers, siblings, mothers, pregnancy, or maternity
within the medical, public health, and social science fields. services, as related to child or family health. Basic science
The framework is outlined in table 1. Operational definitions research was included if it explicitly stated its relation to
for each factor within the framework were constructed at the child or family health. Projects were excluded if they: did not
beginning of the survey. include any outcomes related to health, health related
All projects funded by the selected organisations were behaviour, or health promotion; were published in FY 2002/
identified through hand searching organisations’ websites 2003, but did not state when the project was conducted; and
and the DH (England) National Research Register (NRR).17 were commissioned from a UK institution, but conducted
The NRR included information about research projects outside the UK.
funded by one government department and 14 medical We recorded information from the website on the content
charities included in the review. However, a study is posted of each project. Each project was coded under all relevant
on the NRR only if a researcher submits information about it. categories and subcategories of the framework (table 1). The
We included projects that were receiving funding in the fiscal factors are not mutually exclusive, but rather different ways
Table 2 Summary of child and family health (CFH) research activity compared to total research activity by organisation type
for the fiscal year 2002/2003
CFH research Number of CFH Total expenditure Total number of projects
Organisation type (n) expenditure* projects* (% on CFH)* (% on CFH)*
Government departments (7) £6 190 000 147 £241 600 000 (2.6%) 3041 (4.8%)
Non-departmental public bodies (6) £560 000 16 £27 480 000 (2.0%) 270 (5.9%)
Research councils (3) £10 690 000 80 £482 500 000 (2.2%) 2751 (2.9%)
Medical charities (15) £14 700 000 324 £312 920 000 (4.7%) 4473 (7.2%)
Total (31) £32 140 000 567 £1 064 500 000 (3.0%) 10535 (5.4%)
*All values are estimates based on project information from the websites of 31 organisations.
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Patterns of funding for research 1109
of classifying research activity. Thus, each project could be Burden of disease and wellbeing
coded under multiple factors. We also estimated a budget for Approximately 4% of expenditure was for projects that
the FY 2002/2003 for each project; this was calculated by investigated mortality, 40% on morbidity, 11% on health
dividing the total project budget by the duration of the related behaviour, and 6% on quality of life.
project (in months), then multiplying this value by the
number of months the project was receiving funding during Description of research
the FY 2002/2003. An approximate project budget for each Type of research
organisation for the FY 2002/2003 was estimated by Most expenditure was allocated to projects on basic science or
summing the budgets for the FY 2002/2003 (calculated using using observational methods, with less spent on intervention
the same method) of all projects appearing on its website. We studies and systematic reviews (table 4). Intervention
used expenditure on projects and number of projects to projects were classified as primary, secondary, or tertiary
describe research activity. prevention. Of the intervention projects, approximately three
times the amount of funding supported secondary prevention
RESULTS (40%) projects compared to primary prevention (14%).
We found that there was a substantial amount of project Similarly, significantly more funding supported tertiary
information on the websites of the 31 organisations, but that prevention (48%) projects compared to primary prevention
the type of information available varied. Overall, project (14%).
information from government departments and research
councils was more complete than that from NDPBs and Health economic analysis
medical charities. In the 31 organisations surveyed, we We located only 36 projects, 8% of the total expenditure,
identified 567 projects, with an estimated funding expendi- which included analyses of cost effectiveness or cost of
ture of £32 140 000. All values are estimates of funding and services.
should be regarded as indicative. Table 2 summarises child
and family health research activity, expressed as expenditure
DISCUSSION
(£) and number of projects, and compared to total research
We surveyed child and family health research activity from
activity. A low proportion of the total expenditure was
the FY 2002/2003 and mapped these onto a framework that
allocated to child and family health research.
reflected UK policy and research methodologies. We used a
Analyses of framework web based search strategy to gather information on
Analysis of the framework (table 1) was carried out for all organisations’ research activities through project information
organisations together. Analysis based on expenditure provided on their websites. Our analyses showed that a
showed similar patterns of activity to analysis based on relatively low proportion of funding from these organisations
number of projects; therefore, we present only the former. supported child and family health research. Analysis based
Since projects could cover more than one area and factors on number of projects exhibited similar patterns of activity
within the framework were not mutually exclusive, percen- (not shown). The organisations that we sampled were chosen
tages may add up to more than 100. to include those who spent the most money on child and
family health research, including some charities where the
Policy funding of such research is the primary aim. Thus, this
Children’s NSF proportion seems likely to be an over- rather than under-
Most projects investigated at least one aspect of the Children’s estimate.
NSF (table 3). Most expenditure was allocated to projects on Our results also indicate that there was little child and
maternity, medicines, and children who are ill and/or have family health research activity targeting UK policy priority
long term conditions. Smaller proportions were spent on areas. Although the NHS Plan for England,18 Tackling Health
projects investigating support for parents, integrated child Inequalities: A Programme for Action,11 and Choosing Health:
and family centred services, children in special circum- Making Healthier Choices Easier19 emphasise the importance of
stances, and children in hospital. Projects that were not reducing inequalities across social groups, we found that few
coded as being relevant to the Children’s NSF tended to be projects investigated health inequalities. Similarly, our survey
basic science. revealed that organisations spent little on research for
children with disabilities, mental health needs, and in special
Inequalities circumstances, despite these areas being prioritised in the
A project was coded as including inequalities if its description Children’s NSF1 and Every Child Matters.10 The evidence base to
stated that the project examined age, gender, ethnicity, and/ inform development of the currently inadequate services for
or socioeconomic factors. Only 46 projects, approximately 9% adolescents and the transition from childhood to adult life is
of the total child and family health expenditure, investigated weak,1 but we found that there was relatively little research
at least one inequalities factor. Socioeconomic issues (6%) activity within these areas. Despite the emphasis on preven-
were the most frequently investigated type of inequality. tion in the Children’s NSF,1 Every Child Matters,10 and Choosing
Health: Making Healthier Choices Easier,19 we found little
User involvement research activity focusing on primary and secondary preven-
The description of 13 projects stated that the experience of tion or addressing health promotion. The Wanless report,
children, carers or parents, ‘‘representatives’’ or advocates for Securing Good Health for the Whole Population, discusses
patients, or community groups was collected as part of the strengthening the evidence base on the cost effectiveness of
research. Approximately 1% of the child and family health clinical and public health interventions, and on altering
research expenditure supported projects in this area. health related behaviours.16 Our survey suggests that a
limited number of projects are addressing either area.
Characteristics of people and their lives Our results are based on project information located on
Stages of life organisations’ websites. We chose this method in order to
We found that projects were not evenly distributed across the achieve complete ascertainment of organisations, as the main
stages of life. More funding was spent on projects involving alternative, a postal survey, often suffers from response
mothers and infants (49%) and children (52%), compared to bias.20 We found that most organisations’ websites contained
adolescents (23%). significant amounts of information about their research
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1110 Hawkins, Law
Table 3 Child and family health (CFH) research activity by themes in the Children’s NSF
CFH research % CFH research
Children’s NSF expenditure expenditure
Supporting parents £180 000 0.5
Integrated child and family centred services £370 000 1
Children in special circumstances £620 000 2
Children in hospital £940 000 3
Disabled children £2 070 000 6
Growing up £2 280 000 7
Promoting health £2 410 000 7
Children with mental health needs £2 810 000 9
Medicines £7 390 000 23
Children who are ill and/or have long term conditions £8 990 000 28
Maternity £9 530 000 30
Total Children’s NSF expenditure £24 620 000 77
Total CFH research expenditure £32 140 000
Since projects could cover more than one area and factors were not mutually exclusive, percentages may add up to
more than 100.
activities. However, the level of detail and completeness of improvements to health. For example, the food industry is
information varied between organisations—most included likely to have different motivations in investigating dietary
project descriptions and budgets, but some only reported a behaviour in children to health promotion researchers. We
project title, which limited our ability to describe the activity. were unable to include social care charities in the review
It is likely that some types of research were easier to identify because we found that their websites tended to publish
than others. For example, research on medicines and health findings from their commissioned research rather than
technologies may have been easier to ascertain than those details of currently funded research activity. Therefore, we
addressing integrated services or the effects of education or were unable to analyse this information using the same
environmental factors on health. We were also unable to methodology. We were also unable to collate information on
ascertain what information was not placed on websites and research activity which is not explicitly funded as project
therefore our assessment may not represent the total amount based research; this may include the time of academic or
of research activity funded by the selected organisations. In NHS staff. Since important aspects of our framework were
order to reduce the amount of missed information, each based on DH (England) policy, we only assessed the research
organisation’s project list was hand searched as well as portfolio commissioned by the English Health Department.
searching the National Research Register.17 We recognise that Policy priorities for health in the devolved countries are
our results are estimates of funding and can only be regarded similar,4 5 but we have not assessed the extent to which
as indicative. However, as inaccuracies might be expected to funding from these Health Departments addresses them.
apply equally to both child/family and non-child/family The survey method we used was new and we have been
research activity, the proportion of child/family to non- unable to identify similar surveys. Our method of analysis
child/family research activity should be correctly estimated. was based on work by the National Cancer Research Institute
Furthermore, the information we used is the main interface (NCRI) Partner Organisations,24 which also used expenditure
between funding organisations and the public. As many of on projects to assess patterns of funding in cancer research
the organisations which spend the most money on research organisations, though did not use a web based approach.
have a remit to be open with or engage the public,21–23 we Similar to our survey, the NCRI found that research on
would expect that the information available would not be prevention received relatively little funding and this funding
biased or misleading. has informed current commissioning to address this gap.25
We did not survey all organisations that fund child and The NCRI analysis found a high proportion of expenditure
family health research and focused on those with large was on basic science. While the proportion spent on basic
expenditures. We recognise that sampling in this way risks science in our survey was also quite high (38%), we suspect
introducing bias; however, we surveyed organisations with that this is an underestimate, as we were often unable to
high expenditure, as these have more potential for strategic determine from the information provided on the websites
shifts in direction. In addition, we did not include research whether basic science projects were relevant to child and
commissioned by organisations in the commercial sector, family health.
social care charities, or many smaller funders. The commer- We found the use of websites to carry out a survey had
cial sector probably accounts for a high expenditure on child considerable advantages, but was also challenging in terms of
and family health research, not all of which is motivated by completeness and level of detail of information. As the
Table 4 Child and family health (CFH) research activity by type of research
CFH research
Type of research expenditure % CFH research expenditure
Systematic review £690 000 2
Intervention £7 220 000 22
Basic science £12 340 000 38
Observational methods £15 600 000 49
Total type of research expenditure £32 130 000 100
Total CFH research expenditure £32 140 000
Since projects could cover more than one area and factors were not mutually exclusive, percentages may add up to
more than 100.
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Patterns of funding for research 1111
What is already known on this topic What this study adds
N The UK government has prioritised the health and N Priorities established by UK government policies are
wellbeing of children, young people, and families not reflected in current child and family health research
N Recent reports have highlighted gaps in knowledge activity
and the need for evidence based policy and practice N There is limited current research activity focusing on
health inequalities, economic analysis, primary and
secondary prevention, and children and adolescents at
internet becomes the main interface between organisations high risk of ill health
and the public, such information constraints may lessen.
Information on organisations’ websites would be improved if
each project’s description included an abstract and lay 3 Scottish Executive Health Department. A framework for maternity services in
summary, as well as the amount of funding and duration Scotland. Edinburgh: Scottish Executive Health Department, 2001.
of the project. The use of the world wide web for this type of 4 Black N. Evidence based policy: proceed with care. BMJ 2001;323:275–9.
4a Department of Health. Evidence to inform the National Service Framework for
research would benefit from further testing and evaluation, Children, Young People and Maternity Services, http//www.dh.gov.uk/
as it has the capacity to be a cost effective method and to assetRoot/04/11/24/04/04112404.pdf (accessed 10 August 2005).
increase the availability of information to the public. 5 Anon. UK paediatric clinical research under threat. Arch Dis Child
1997;76:1–3.
Our findings suggest that the gaps in the evidence 6 Royle J, Steel R, Hanley B, et al. Getting involved in research: a guide for
underlying policy priorities are unlikely to be filled by consumers. Winchester: Consumers in NHS Research Support Unit, 2001.
research that is currently ongoing. It also accords with 7 World Health Organisation. Preamble to the Constitution of the World Health
anecdotal accounts from child and family health researchers Organization as adopted by the International Health Conference, New York,
19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 States
that this area of research receives a low proportion of funding (Official Records of the World Health Organization, no. 2, p. 100) and
from the major funders.5 Some of the gaps in the evidence are entered into force on 7 April, 1948.
being addressed by commissioning activity. For example, the 8 Department of Health. Draft research governance framework for health and
Department of Health (England) has recently commissioned social care, http://www.dh.gov.uk/assetRoot/04/02/08/96/
04020896.doc (accessed 12 December 2003).
a research network on medicines for children,26 and a 9 Association of Medical Research Charities. http://www.amrc.org.uk
consortium of partners are funding the National Prevention (accessed 10 January 2004).
Research Initiative,25 though this is not focused on children. 10 The Department for Education and Skills. Every child matters. London: The
Stationery Office, 2003.
Funding is also likely to be required to develop capacity, so
11 Department of Health. Tackling health inequalities: a programme for action.
that a skilled research workforce is in place to conduct high London: Department of Health, 2003.
quality research within these policy priority areas. Several 12 Department of Health. Getting the right start: the national service framework
areas of policy priority are likely to require further investment for children, young people, and maternity services—emerging findings.
London: Department of Health, 2003.
in research if policy aims such as reduction in inequalities in 13 Department of Health. Listening, hearing and responding: Department of
health, cost effective, child centred services, and improved Health involving children and young people. London: Department of Health,
health for all children, including those who are disabled, 2003.
vulnerable, or mentally ill, are to become a reality. 14 Department of Health. Building on the best: choice, responsiveness and equity
in the NHS. London: The Stationery Office, 2003.
15 INVOLVE. Definition of consumers, http://www.invo.org.uk/faq4.htm
ACKNOWLEDGEMENTS (accessed 15 December 2003).
We would like to thank Dr Carolyn Davies for her advice and support. 16 Wanless D. Securing good health for the whole population. London: The
We would also like to thank our colleagues at the Institute of Child Stationery Office, 2004.
Health for their feedback. 17 Department of Health. National research register, http://www.update-
software.com/national/ (accessed 2 October 2004).
..................... 18 Department of Health. The NHS plan: a plan for investment, a plan for
reform. London: The Stationery Office, 2000.
Authors’ affiliations 19 Department of Health. Choosing health: making healthier choices easier.
S S Hawkins, C Law, Institute of Child Health, University College London, London: The Stationery Office, 2004.
London, UK 20 Hager MA, Wilson S, Pollak TH, et al. Response rates for mail surveys of
nonprofit organizations: a review and empirical test. Nonprofit and Voluntary
Funding: Research at the Institute of Child Health and Great Ormond Sector Quarterly 2003;32:252–67.
Street Hospital for Children NHS Trust benefits from R&D funding 21 Department for Constitutional Affairs. Code of practice on access to
received through the NHS Executive government information, 2nd edn. London: Department for Constitutional
Affairs, 1997.
Competing interests: none
22 Medical Research Council. Mission statement, http://www.mrc.ac.uk/index/
This work was undertaken by Dr Catherine Law and Ms Summer about/about-mission.htm (accessed 22 November 2004).
Hawkins who received funding from the Department of Health. The views 23 Wellcome Trust. Aims and objectives, http://www.wellcome.ac.uk/strategy/
expressed in the publication are those of the authors and not necessarily aims/ (accessed 22 November 2004).
those of the Department of Health. 24 National Cancer Research Institute. Strategic analysis 2002: an overview of
cancer research in the UK directly funded by the NCRI partner organisations.
London: National Cancer Research Institute, 2002.
25 National Cancer Research Institute. National prevention research initiative—
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Patterns of research activity related to
government policy: a UK web based survey
S S Hawkins and C Law
Arch Dis Child 2005 90: 1107-1111
doi: 10.1136/adc.2004.069781
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